Hi @pysullivan, welcome to Connect. Here a few previous discussions in the community about Waldenstrom macroglobulinemia (WM), a type of non-Hodgkin lymphoma (NHL):
I'm tagging other members @sstouten@azjulie@dcp45 who have also talking about Waldenstrom. While we wait for others to join in, PYSullivan, why don't you tell us a bit more about you? Have you been recently diagnosed with WM? I assume watch and wait is the proposed treatment option at the moment, correct?
I too have Waldenstrom macrogrobulinemia. Six years ago they thought I had NHL, BUT, Now after being in remission for three years, my bloodwork is now showing it us that not NHL! The same infusion is used for both..that is why after 3 years of infusions my blood labs are pointing more toward this. Will be same infusions whenever they feel it is time to start up again. BTW, I also have primary left lobe lung cancer and a small spot on right lung. Had radiation for left lung..stoppedit. Next week I get a CT scan to see if either has grown. And July I get a PET scan looking for any new tumors. Life is not fun. I battle fatigue all the time, then add insomnia. Sometimes I'm awake all.night.... Thank you for this group. BTW,I had a liver transplant in 2003 for an autoimmune liver disease, PBC.
catalinae | @catalinae wanted to do a private comment; but don't know how. I sincerely appreciate someone who can understand blood disorders and avoid cold. I have cold urticaria - anaphylaxis shock when I get cold. I've always been high on iron (but) first time ever; I'm have MF and PV. We have opposite problem; you have macroglobulin (red blood cells to big > over 100) I have macrocytic anemia (red blood cell is
I too am annemia. Plus MAST CELL ACTIVATION DISORDER. My body is allergic to most foods so I produce too much hystamines. Funny, I get COLD often and can't get warm..but they think its from MAST CELL, now I am wondering if this is the real reason I get cold so easy.. I'll look up your " cold urticaria". Gets confusing when I have so many autoimmune illness's. I have chronic cough from post nasal drip which comes from MAST CELL..... It is hard..but so far I've made it to 78 years old. Also, colitis! Sjogrens, arthritis, spine problem L1 thru L4...etc...yards dealing with my life
It may be the best option, instead of some protocol that damages your health only to fail to cure. The notion of using cart t cell therapy as a last resort seems cruel when it gives the best remission rates.Has anyone heard of Thraxton HDL nanoparticles?? It's suppose to attach to HDL that feeds cancer and starves the cancer WITHOUT chemotherapy.
I have been diagnosed with Monoclonal low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. Just been told to go home and live my life as there is no cure and treatment does not start until I have symptoms. Labs are not looking too great but could be worse, I suppose. I also now have Hypothyroidism. What next? Let me know how you are doing.
Elainejarrett sounds to me like a case of some sort of lymphoma, as you say. I have a bucket full of these disorders, and no healing for any of them. I suspect that, unless you are under 10 years, you will do just as well by treating what you can, guessing at the rest, and doing a lot of fishing and praying. I have all of these and many more I just try to enjoy living.
I too have Waldenstrom macrogrobulinemia. Six years ago they thought I had NHL, BUT, Now after being in remission for three years, my bloodwork is now showing it us that not NHL! The same infusion is used for both..that is why after 3 years of infusions my blood labs are pointing more toward this. Will be same infusions whenever they feel it is time to start up again. BTW, I also have primary left lobe lung cancer and a small spot on right lung. Had radiation for left lung..stoppedit. Next week I get a CT scan to see if either has grown. And July I get a PET scan looking for any new tumors. Life is not fun. I battle fatigue all the time, then add insomnia. Sometimes I'm awake all.night.... Thank you for this group. BTW,I had a liver transplant in 2003 for an autoimmune liver disease, PBC.
To all I send healing hugs,my friend said it sounds better than "get well" With our WM there are so many symptoms, for myself I feel like "what else"? Thank you all for sharing and for being there.
BMB in November 2021. With low-grade B-cell lymphoproliferative disorder. With potential marginal zone lymphoma. It seems challenging to arrive at a diagnosis.
I am a bit anemic, tired and cold most of the time.
Hi Beverly, my daughter was told she will now be treated for the same thing, after being treated for Multi Myeloma these last 6 wks. Dr now thinks it is Lympho-plasmocytic. She is anemic, tired and cold all the time too. They are going to change her meds. For now they are giving her a break from them. Protein is high and kidney he has concerns. As her mom, I don't know what to expect next. I hope to hear more from friends on this grp. Everyone has been great!
I was diagnosed with Waldenstroms a year ago. Is shortness of breath a common symptom? It happens upon the slightest exertion during the day, and often in the middle of the night when I am lying down and suddenly wake up gulping for air.
I was diagnosed with Waldenstrom macroglobulinemia July of 2021. I went to the emergency room for severe back pain and after six hours I was admitted to the hospital for a possible kidney stone and kidney failure. The next day the Dr. said I had good news and bad news. The good news I passed the kidney stone and the bad news I had CANCER!
I felt like a character in a Charlie Brown cartoon where everything was mumbled, and I could only hear the word CANCER!!!
Initially, it was believed I had Multiple Myloma. Upon further blood work and a bone marrow sample which was sent to Mayo, it was determined I had Waldenstrom's macroglobulinemia. I started several plasmaphersis treatments and one chemotherapy with bendamustine and rituximab.
Several weeks later, and about thirty pounds lighter, I was readmitted to the hospital after a visit with my oncologist.
I was unable to eat anything and developed a SEVERE RASH covering my entire body!! I was itching from my head to the bottom of my feet. I was redder than a ripe tomatoe, had swollen lips and eventually my skin peeled from the top of my head, ears, hands, back and almost my entire body. Later the rash seemed to correlate with IgM levels.
While in the hospital oral chemotherapy was started using ibrutinib. Upon discharge from the hospital it took about three months for my rash and skin peeling to stop. I started to eat actual food and not supplement drinks. The food no longer tasted metalic nor did I have to use plastic utensils.
My oncologist arranged for me to go to Mayo Clinic in Rochester, MN. I spent two days in Mayo and was referred to Dr. Binder for consultation. I was impressed with the time he took to listen to me and answer questions I had. He reaffirmed my oncologist in Sioux Falls, SD was doing what he could and was right about how to treat my condition.
I did several blood draws and a twenty-four hour urine sample. Dr. Binder suggested further testing to help determine issues I am having with pain in my hands etc.
I am so glad I have a strong support system of God, Family and friends!!!! I couldn't ask for better Physicians and people taking care of me.
I have had CLL since 2017 and now another non-hodgkin lymphoma. My back hurts all the time but thought it was my Arachniphobia which causes nerve pain. Finger tips are now numb in right hand. After hearing about your rash and pain after treatment, I am inclined to reject Ritux and Benda when the Dr's decide to suggest treatment for me. I have received more info from you today than my oncology visit to Emory Hospital this week! Thanks.
I am inclined to think my bad back pain, fatigue, and numbness in finger tips is due to WM in addition to my CLL The doctor at Emory Hospital could have told me this during a visit but declined, so when it comes to great doctors and treatments, I distrust everybody.
Hi Beverly, my daughter was told she will now be treated for the same thing, after being treated for Multi Myeloma these last 6 wks. Dr now thinks it is Lympho-plasmocytic. She is anemic, tired and cold all the time too. They are going to change her meds. For now they are giving her a break from them. Protein is high and kidney he has concerns. As her mom, I don't know what to expect next. I hope to hear more from friends on this grp. Everyone has been great!
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I too have Waldenstrom macrogrobulinemia. Six years ago they thought I had NHL, BUT, Now after being in remission for three years, my bloodwork is now showing it us that not NHL! The same infusion is used for both..that is why after 3 years of infusions my blood labs are pointing more toward this. Will be same infusions whenever they feel it is time to start up again. BTW, I also have primary left lobe lung cancer and a small spot on right lung. Had radiation for left lung..stoppedit. Next week I get a CT scan to see if either has grown. And July I get a PET scan looking for any new tumors. Life is not fun. I battle fatigue all the time, then add insomnia. Sometimes I'm awake all.night.... Thank you for this group. BTW,I had a liver transplant in 2003 for an autoimmune liver disease, PBC.
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2 ReactionsI too am annemia. Plus MAST CELL ACTIVATION DISORDER. My body is allergic to most foods so I produce too much hystamines. Funny, I get COLD often and can't get warm..but they think its from MAST CELL, now I am wondering if this is the real reason I get cold so easy.. I'll look up your " cold urticaria". Gets confusing when I have so many autoimmune illness's. I have chronic cough from post nasal drip which comes from MAST CELL..... It is hard..but so far I've made it to 78 years old. Also, colitis! Sjogrens, arthritis, spine problem L1 thru L4...etc...yards dealing with my life
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1 ReactionI don't know of anyone in my group that get cart T cells is for Multiple myloma..and it works for most.
Elainejarrett sounds to me like a case of some sort of lymphoma, as you say. I have a bucket full of these disorders, and no healing for any of them. I suspect that, unless you are under 10 years, you will do just as well by treating what you can, guessing at the rest, and doing a lot of fishing and praying. I have all of these and many more I just try to enjoy living.
To all I send healing hugs,my friend said it sounds better than "get well" With our WM there are so many symptoms, for myself I feel like "what else"? Thank you all for sharing and for being there.
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Helpful -
Hug
2 ReactionsHi Beverly, my daughter was told she will now be treated for the same thing, after being treated for Multi Myeloma these last 6 wks. Dr now thinks it is Lympho-plasmocytic. She is anemic, tired and cold all the time too. They are going to change her meds. For now they are giving her a break from them. Protein is high and kidney he has concerns. As her mom, I don't know what to expect next. I hope to hear more from friends on this grp. Everyone has been great!
I was diagnosed with Waldenstroms a year ago. Is shortness of breath a common symptom? It happens upon the slightest exertion during the day, and often in the middle of the night when I am lying down and suddenly wake up gulping for air.
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Hug
1 ReactionI have had CLL since 2017 and now another non-hodgkin lymphoma. My back hurts all the time but thought it was my Arachniphobia which causes nerve pain. Finger tips are now numb in right hand. After hearing about your rash and pain after treatment, I am inclined to reject Ritux and Benda when the Dr's decide to suggest treatment for me. I have received more info from you today than my oncology visit to Emory Hospital this week! Thanks.
I am inclined to think my bad back pain, fatigue, and numbness in finger tips is due to WM in addition to my CLL The doctor at Emory Hospital could have told me this during a visit but declined, so when it comes to great doctors and treatments, I distrust everybody.
WM is better than MM but be wary of treatments.
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